Sharing our lives as a complex family

Dear Parents of Sick Healthy Kids

If you are the parent of a healthy child, I want to talk to you a minute, if you care to listen. I hope to let you try on my shoes a minute, because I always feel like we’re always talking past each other.

I want you to understand. I get it. I remember being scared shitless when Hannah was little and had a high fever. I remember running her to urgent care for a virus, certain something was dreadfully wrong. I know the angst of parenting a little one during cold and flu season when they aren’t well. It feels like it’s never going to end, you’re tired and scared, it’s awful. It’s natural to be frustrated, upset and to complain. It feels like an eternity since you got a good night sleep, since you have felt clean and left the house. There’s no end in sight and you are just done. I have been there, done that. I want you to understand that I’ve lived in those shoes.

Now I want you to just imagine mine.

That trip to the doctor? It turned into a trip to the ER, and a hospital admission. That hospital admission, it lasted over a week. Instead of riding out a fever, we rode out hospitalizations with tests, alarms, vital checks every 4 hours, and vinyl cots for night after night.

Not just once, not just 2 or 3 times; we’ve actually lost track of the number of times we have experienced that.

That’s enough. Believe me. But it isn’t all.

There are the also the life-altering diagnoses. Getting the news that your child isn’t just sick, the sickness is life-threatening. Or the disease isn’t something that will run it’s course, but it will impact every day for the rest of your child’s life.

Years of my child’s life have been altered by illness. Years of my parenting has been in that headachy haze of chronic sleeplessness that comes with parenting an acutely ill child.

Years.

I tell you this not as a guilt trip or to shame you for feeling spent while caring for your sick child, but because I feel like you forget that how much and how long we have lived in that dreadful zone. I just want you to have perspective.

On that night when your little one is thrashing with a fever and you’re covered in vomit, think of the families whose kids have chronic insomnia or chronic vomiting…or both.

When you’re are flustered trying to decide if you need to run to the med center for a fever, remember that some families don’t have a choice, the child has to go to ER for every single fever.

Your kid is a monster because he’s on steroids for croup? Some kids endure dozens of courses of steroids. Or more.

The medical bills take you by surprise with the extraordinary cost of care, don’t they?

I’m not asking you to get big girl panties, to suck it up, or even revoke your right to whine and complain, because I get it. It is hard.

I just want you to understand that there are those of us who live months and even years of those days. Please just remember us. Please.

We’ve long since given up complaining about it. We often try to make light of it, but it’s doggone hard.

The thing about parenting in the age of information, like we do, is that every time your kid gets sick you have that dread, that feeling at the bottom of your stomach: “Is this the time when they find out something is really wrong?”; “Will this be that time when the cold is not just a cold?”; “Will this be the time when I, like so many other parents before me, will be told that my child is gravely ill?”
Because, after all, why not?! Why do I get to be so luck and have mostly health kids while so many parents, like you, go through the unimaginable pain of watching a child suffer? I have read about them, I have seen their suffering on social media.
Having kids has told me to fear like nothing else before; to feel like my happiness is completely dependent on their happiness and well being is one of the most terrifying feelings. That saying: “to have a child is to decide forever to have your heart walking outside of your body” is absolutely true.

The one story a parent of a “normal” child tells OVER & OVER about the ONE time their kid had 103 fever, or whatever. Sorry not sorry, I roll my eyes everytime I hear the story for the 19,658,423 time.